Earlier this year, the public was transfixed by two news stories involving brain death. The circumstances of Jahi McMath and Marlise Muñoz were very different on the surface, but the legal and ethical questions concerning the diagnosis of brain death and the use of life support in both women started a firestorm of controversy even within the Catholic Church.

No wonder the average person, Catholic or not, is confused.

It is important to first scrutinize the facts of both cases to begin to understand why there is a lack of unity on such life and death matters even among respected Catholic sources.

Jahi McMath

Jahi McMath, a 13-year-old girl, underwent a routine surgery for sleep apnea in December 2013 at a California children’s hospital. That night she started bleeding and eventually her heart stopped. Her heart was restarted and she was placed on a ventilator to stabilize her condition, but soon the doctors declared her brain dead and prepared to remove the ventilator. However, the family insisted that the ventilator be continued, hoping that Jahi might eventually get better.

The doctors disagreed, insisting that Jahi was legally dead by brain death criteria. The parents went to court to keep the doctors from removing her ventilator but after a series of legal battles lasting weeks, a judge eventually gave Jahi’s family permission to transfer her to another facility that would continue the ventilator.

Virtually all the ethicists and other experts contacted by most media outlets condemned the family’s actions as denying the reality of brain death. In January the National Catholic Bioethics Center issued a statement that said, in part, “… the determination of death by the rigorous application of the neurological criteria is considered legitimate by the Catholic Church, which accepts the findings of science in such a determination.”1

In a January 10, 2014 USA Today article, ethicist Arthur Caplan, head of the bioethics division at New York University’s Langone Medical Center, condemned the judge’s decision for Jahi’s family, declaring that brain dead people will eventually “start to decompose,” even if the ventilator was continued.2

However, almost 3 months later in a March 28, 2014 interview with NBC Bay Area News,3 Jahi’s mother reported that her daughter now moves her arms, legs, and head spontaneously but “is still asleep” and unable to move on command. Jahi is currently being fed by a feeding tube, sustained on a ventilator on room air (no extra oxygen) and receives physical therapy 3 to 4 times a week. At the time of this interview, Ms. McMath had just received an award from the Terri Schiavo Life & Hope Network as a relative who protects “a loved one against overwhelming odds.”

While Jahi’s movements described by her mother were dismissed by some experts as merely “spinal reflex movements,”4 it was a foot movement in the 2008 case of Zack Dunlap5 that led doctors to rethink their diagnosis of brain death in him and stop an imminent organ donation. Although Zack made a very fast recovery and Jahi’s continued lack of apparent conscious movement is not as hopeful, critics of brain death point to these kinds of developments as showing how much we still do not know about the human brain and its capabilities.

Although the medical criteria used to determine brain death vary — often widely — from one hospital to another, the definition of brain death is supposed to show an irreversible lack of function of the entire brain and brain stem. In Zack Dunlap’s case, he had more testing, including a test showing a lack of blood flow to the brain, than the average person diagnosed as brain dead.

Marlise Muñoz

Marlise Muñoz was a 33-year-old woman who was 14 weeks pregnant with her second child in November 2013 when she collapsed from a suspected blood clot and stopped breathing at home. She was taken to a Texas hospital and, like Jahi McMath, revived and put on a ventilator. Like Jahi, Mrs. Muñoz was also declared brain dead within a short time; but in this case, the roles of the family and hospital were reversed. Mrs. Muñoz’s husband was ready to remove the ventilator and the hospital objected because of a Texas law, like those in several other states, that prohibits the withdrawal of life support from a pregnant woman so that the baby has at least a chance to survive to birth.

Mr. Muñoz strenuously disagreed, stating that his wife told him she would not want to live in such a state and, in several news reports, voiced his concern that the lack of oxygen and effects from resuscitation might have damaged his unborn child. He went to court to force the hospital to remove the ventilator.

This time, virtually all the many ethicists and experts contacted by the media supported the husband’s decision to remove the ventilator. Many argued that the 1989 Texas law was only meant to apply to pregnant women in conditions like a “vegetative state,” not a brain-dead woman. Some even claimed that removing the ventilator was similar to a legal late-term abortion. As the case wound its way in court for weeks, lawyers for Eric Muñoz eventually claimed that tests showed the now-22-week-unborn child was “distinctly abnormal” with fluid building up inside the skull, a possible heart problem, and lower extremities “deformed to the extent that the gender cannot be determined.”6 In an interview on CNN’s Anderson Cooper 360°, Mrs. Muñoz’s mother “described in agonizing detail in the interview how towards the end, her daughter’s body had begun to visibly deteriorate, making it difficult to look at an empty shell of what had been her beloved daughter.”7

A judge ordered that life support be removed, and on January 24, 2014, both mother and baby died.

While many commentators stated that it was virtually impossible for a pregnant mother declared brain dead to deliver a healthy baby, a 2010 British Medical Journal study reported that “In 12 (63%) of 19 reported cases, the prolonged somatic support [of the mother declared brain dead] led to the delivery of a viable child.”8

In the Muñoz case, virtually all pro-life and Catholic ethicists agreed that giving the unborn child at least a chance to be born was the ethically correct position. And, of course, birth defects do not make a baby unadoptable.

Confusion Among Catholics

The controversy about brain death has been simmering among Catholic ethicists, medical experts, and theologians for many years.

It all started with a 1968 Harvard paper titled “A Definition of Irreversible Coma — Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.”9 Within a very few years, all 50 states included brain death in the legal definition of death. This allowed brain death criteria to be used for the purpose of organ transplantation. Before this, organ transplantation was virtually impossible in patients declared dead by the traditional standard of irreversible cessation of breathing and heartbeat. In those cases, vital organs were too damaged by lack of blood flow and oxygen to be useful. Brain death allowed organs to be harvested while a ventilator supported breathing and the heart was still sending blood to vital organs.

In 1975, the Committee on Health Affairs of the United States Catholic Conference issued “Guidelines for the Determination of Brain Death,” which concluded that criteria for brain death to provide “moral certainty” of brain death were “morally sound and acceptable.” In 1981, the Pontifical Council “Cor Unum” stated that the determination of the moment of death is a medical, not a theological, judgment.10

The Pontifical Academy of Science studied the question of determination of death in 1985 at the request of Pope John Paul II. The Academy concluded “From the debate it emerged that cerebral death is the true criterion of death, since the definitive arrest of the cardiorespiratory functions leads very quickly to cerebral death.”11 Apparently searching for greater clarity, Pope John Paul II raised the question again with the Pontifical Academy in 1989. The Academy reached the same conclusion.

In 1995, the Pontifical Council for Pastoral Assistance to Health Care Workers under Fiorenzo Cardinal Angelini issued its Charter for Health Care Workers. The legitimacy of neurological criteria was accepted by this body as well, and it concluded, “When total cerebral death is verified with certainty, that is, after the required tests, it is licit to remove organs and also to surrogate organic functions artificially in order to keep the organs alive with a view to a transplant.”12

In 2000, Pope John Paul II gave an address to a Vatican conference on organ donation where he stated:

Here it can be said that the criterion adopted in more recent times for ascertaining the fact of death, namely the complete and irreversible cessation of all brain activity, if rigorously applied, does not seem to conflict with the essential elements of a sound anthropology. Therefore a health-worker professionally responsible for ascertaining death can use these criteria in each individual case as the basis for arriving at that degree of assurance in ethical judgment which moral teaching describes as “moral certainty.” This moral certainty is considered the necessary and sufficient basis for an ethically correct course of action. Only where such certainty exists, and where informed consent has already been given by the donor or the donor’s legitimate representatives, is it morally right to initiate the technical procedures required for the removal of organs for transplant.13

Nonetheless, the Pontifical Academy of Sciences published a statement in 2008 under the title “Why the Concept of Brain Death Is Valid as a Definition of Death.”14

In November 2008, Pope Benedict XVI gave an address to a prestigious international conference on organ transplants in which he stated:

In an area such as this, in fact, there cannot be the slightest suspicion of arbitration and where certainty has not been attained the principle of precaution must prevail. This is why it is useful to promote research and interdisciplinary reflection to place public opinion before the most transparent truth on the anthropological, social, ethical and juridical implications of the practice of transplantation. However, in these cases the principal criteria of respect for the life of the donator must always prevail so that the extraction of organs be performed only in the case of his/her true death.15

In the meantime, other respected Catholic doctors and ethicists like Paul Byrne MD, Alan Shewmon MD, and E. Christian Brugger PhD, as well as other doctors, nurses, and ethicists raised alarms about the validity of brain death criteria, including the lack of standards for testing from one hospital to another and the continued survival of some patients declared brain dead for years. They cite cases where such patients grew, achieved puberty, gestated their unborn baby for months, etc., as well as the reported cases of recoveries like Zach Dunlop’s.

In response to the paucity of such critiques at Vatican conferences, a conference called “Signs of Life,” featuring critics of brain death from all over the world, was held near the Vatican in February 2009.16

Now with more and more people alarmed about the issue of brain death, especially when organ transplantation is involved, it seems that the controversy is far from over.

Personal observations

Back in the 1970s when I was a young intensive care unit nurse, no one I knew questioned the new innovation of brain death. We trusted the experts.

However, as the doctors diagnosed brain death in our unit and we cared for these patients until their organs were harvested, some of us became uncomfortable. For example, doctors told us that these patients would die anyway within two weeks even if their ventilators were continued, but no studies were cited. I asked many questions but was told that greater minds than mine had it all figured out. It was years before I realized that these doctors did not have the answers to my concerns either.

Over the ensuing years, I began to see many more changes in brain death diagnosis and organ transplantation that alarmed me.

These include the innovation in the 1990s of Donation after Cardiac Death (DCD, formerly known as non-heart beating organ donation), in which brain death need not be determined but instead is based on when (or if) a critically ill — but not brain dead — patient stops breathing within an hour after the ventilator is removed with the agreement of the family.

While the general public is mostly unaware of DCD, such organ donor protocols are now policy in both Catholic and secular hospitals. Ironically while so many Catholic ethicists and conferences endorse brain death as the true standard for death, the lack of brain death standards in DCD is virtually ignored. One of the innovators of DCD organ transplantation, Dr. Michael DeVita, even admitted “the possibility of [brain function] recovery exists for at least 15 minutes” after heartbeat and breathing stops but stated that “the 2-minute time span (before organ removal) probably fits with the layperson’s conception of how death ought to be determined.”17

It is frightening but perhaps illuminative that one of the first known potential DCD donors was a conscious woman with severe multiple sclerosis who requested that her ventilator be removed and that her organs be taken when she stopped breathing.18 (In the end, like a significant number of other DCD donors,19 she continued to breathe for too long for her organs to be usable.)

Other developments and proposals were also disturbing: Paying living donors for organs, presumed consent so that only people who signed a paper saying that they did not want their organs taken were exempt, some doctors in Belgium touting their success pairing assisted suicide/euthanasia with organ transplantation20 and even some ethicists proposing that the dead donor rule itself be eliminated in order to get more organs to transplant.21 The dead donor rule is an ethical norm that states that the donor must be dead before organs are harvested and the harvesting itself must not cause the death of the donor.22

On the other hand, I also saw cases where families were told that their loved one was brain dead for the purpose of withdrawal of treatment, not organ transplantation. When I pointed out that some of these patients continued to breathe on their own after the ventilator was removed and thus were obviously not brain dead by any criteria, I was often met with shrugs and comments like “close enough” or “she was going to die soon anyway.” Attitudes like that chilled me to the bone. It seemed that pessimism, hubris, and misplaced sympathy — rather than evil intent — trumped ethical integrity. The secular media often echoes this apathy, especially when it erroneously equates coma or the so-called “vegetative state” with brain death itself. The result can be lethal.

After years of study and prayer, my personal stand is rejection of two extremes: that brain death is settled science and ethics that no one dare even question; and that withdrawal of ventilators with or without organ donation is always tantamount to murder.

I believe that ventilators, like all other forms of treatment, are subject to the same traditional principle: Treatments that are futile in terms of survival or unduly burdensome to the person can be ethically withdrawn according to strict principles ensuring that death is not intended. I believe in the traditional hospice philosophy to neither hasten nor prolong death.

Personally, I have not signed a standard organ donor card because the wording is so vague (death, not brain death or DCD, is all that is mentioned) and in some states that card can even automatically override family decision-making. I have told my family that I agree to the donation of every tissue that can be used after a careful determination of natural death. Tissues like corneas, heart valves, bone, and skin are not dependent on immediate harvesting after determination of death.

I do not take this position lightly. Right now, I have a daughter-in-law who is in desperate need of a kidney transplant, the most common transplant. She has studied the issue and told her doctors that she wants a living donor. Living donors are generous family members, friends, or even strangers who willingly offer one of their two kidneys for transplant after testing for compatibility.

My daughter-in-law’s decision was based not only on ethical concerns about brain death and non-heart beating organ donation but also on the facts that organ availability is greater with living donor kidneys and that such kidneys last almost twice as long as cadaver kidneys and work immediately.23

Unfortunately, it is uncertain whether the controversy over brain death or even DCD will ever be completely resolved, even within the Catholic community of experts and authorities. However, I do have hope that the issue of organ transplantation that is such a prime motivator of brain death determination and DCD may someday become moot.

Not only have treatments like adult stem cell transplants and improved therapies helped many people with end-stage organ disease survive, but great strides are being made toward developing artificial organs. For example, just last year scientists in Australia grew a tiny but functioning kidney using human skin cells.24 If a person’s own cells can be used to grow an organ, that could eliminate the rejection problem that causes so many transplants to fail, as well as the need for the current powerful and expensive drugs used to prevent rejection.

In the meantime, there must be the honest, respectful discussion about the critical issues of brain death, DCD, and organ donation, based on the highest ethical principles and scrutiny.

18 Michael A. DeVita and James V. Snyder, “Development of the University of Pittsburgh Medical Center Policy for the Care of Terminally Ill Patients Who May Become Organ Donors after Death Following the Removal of Life Support” in Procuring Organs for Transplant. Robert M. Arnold, et al, eds. Baltimore: Johns Hopkins University Press, 1995.

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